Musings on Mesothelioma

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If ever there was the perfect concert to have your ostomy bag leak during, it would be at a Flaming Lips performance. Picture lots of glitter, color, sparkle, inflatable creatures and a lead singer wearing rainbow wings while riding a lit-up unicorn. Part psychedelic rock, part theatre, part performance art, The Flaming Lips don’t put on a typical show.

Among a sea of mostly twenty-eight year olds, many of whom were dressed in colorful costumes and probably high, (no judgement, it’s the perfect concert to be high at!), stood my partner and I, both 49 years old. We fit in just fine. I was dressed in black skinny jeans, Adidas, a colorful long tunic and sparkly necklace. The problem was, instead of eating magic mushrooms or smoking a joint before the show, I had decided to pound back an entire, GIANT grapefruit. Now, keep in mind that I have an ileostomy: the lower part of my small intestine – the ileum – has been surgically brought out through an opening in my abdominal wall (the opening is called a stoma). Visually, it kind of looks like I have a strawberry sitting on my tummy. Ron, as I like to call my ileum/stoma, spews out everything I eat into a bag. Usually food exits my body in liquid form and it is fairly simple to empty the bag into the toilet throughout the day. But, certain foods like grapefruits, get digested differently and they exit my body in a much thicker fashion. So, essentially I had a hideous traffic jam of very thick grapefruit trying to exit my ileum and make it down to the safety of my bag.

Fast forward to me touching my bag – I always check it a million times when I’m out of the house – and feeling wetness! My worse nightmare had come true – a bag leak in public! Sweet Jesus! Thankfully I always carry supplies with me wherever I go, so I made a mad dash to the ladies room. The bathroom had speakers so I was able to listen to the show as I struggled with my bag explosion. In the stall next to me was a young woman wearing a unicorn headband. She was in her stall for almost as long I was in my mine. I’m not sure what she was doing, but I’m pretty sure she was having more fun than I was.

The bag clips on to a sticky thing called a “flange,” which is what encircles my ileum. After doing a bag change I always lie down and apply light pressure with my hand to the flange and bag: the warmth of my hand helps to properly affix the flange to my skin. So I decided to half sit, half lie on one of the chairs in the lounge section of the bathroom – LOL. I watched as 28 year olds wearing faux ripped jeans, applied massive amounts of eyeliner and lip gloss. They looked so fresh and shiny and beautiful and for a moment I felt like crying out of envy. I’m sure I looked like a total weirdo, half lying on a chair, holding my mid-section. But thankfully no one bothered to ask why I was splayed out so strangely – they probably just thought I was tripping hard on psychedelics. So again, it was the perfect concert to be at.

We had to leave a little early because my tunic was wet and I was exhausted from the emotional drama of the experience. But before going I was lucky enough to see their lead singer Wayne Coyne, perform David Bowie’s song “Space Oddity,” while surfing the crowd in his giant clear ball. So thank you Flaming Lips for helping me to survive my first public bag leak. #unicornsandgrapefruits

My rescue dog – Dexter The Elderbull – is finally here! Earlier this week my brother drove with me to Hamilton to pick him up from his foster family. The drive home was relatively smooth, though Dexter did try to jump into the passenger seat to eat my brother’s Tim Horton’s donut, but really, who can blame him for that?

Many people have asked me why I adopted an elderly dog – Dexter is a twelve year old Pit-Bull. What I usually tell people is that elderly dogs have a difficult time getting adopted and they deserve a loving retirement home. And that’s the truth. And I’ve always wanted to adopt an elderly dog, that’s also the truth. But here’s the other truth: with my type of cancer – Peritoneal Mesothelioma – a “long-term survival rate” is considered five years. I was diagnosed and treated in November 2014. So far my scans have been good, though that doesn’t mean as much as it does with other cancers. Often patients with Mesothelioma have regular “clear scans,” then start feeling sick, then get exploratory surgery, only to find out that there are Tiny Cancer Dancers doing The Hustle in their abdomen. So, my thinking was: “I will adopt an elderly dog and hopefully he or she will die before I do.” But of course that’s not exactly the kind of thing you say casually to someone at the park, no one wants to hear that.

There was also my partner to consider. After my dog Leroy’s death in March, my partner didn’t really want to get another dog. His primary concern was that I would die, he would be devastated and he wouldn’t be able to or want to take care of my dog. Again, that’s not something that I usually tell people, (other than my family & friends), because I have no interest in making people feel uncomfortable.

Though I am often prone to getting carried away with theatricality, sparkle infused dreaming and wishful thinking, when it comes to my cancer and the strong probability of dying young (ish), I am very pragmatic. I wanted a dog and I found a creative solution. One Elderly Dog + One Mesothelioma Patient who naps like a toddler = the perfect joyful solution!

Editor’s Note: A special thank you to the friends and family who have volunteered to take care of Dexter if ever we need the help. xo